Impact of a novel family-centered values clarification tool on adolescent sperm banking attempts at the time of a new cancer diagnosis

Purpose

Over half of males experience fertility impairment after childhood cancer therapy, which often causes psychosocial distress. Yet, fertility preservation (FP) remains underutilized. The goals of this study were to determine the feasibility and impact of implementing a family-centered FP values clarification tool on sperm banking attempts among adolescent males newly diagnosed with cancer, and identify key determinants of banking attempts.

Methods

A prospective pilot study was conducted among families of males (12–25 years old), prior to cancer therapy. Thirty-nine of 41 families agreed to participate (95%); 98 participants (32 adolescents, 37 mothers, 29 fathers) completed the Family-centered Adolescent Sperm banking values clarification Tool (FAST). Analyses assessed the impact of the FAST on banking attempts and examined associations between demographic/medical characteristics, FAST subscales (perceived threat, benefits, barriers), and banking attempts.

Results

Twenty-three (59%) adolescents attempted to bank, compared to 8 adolescents (33%) during baseline assessment (p=.04). Significant associations were identified between banking attempts and adolescents’ report of perceived threat (r_pb=.45, p=.01) and benefits (r_pb=.57, p=.01). Only mothers’ proxy reports of adolescent perceived threat (r_pb=.42, p=.01) and benefits (r_pb=.47, p=.003) were associated with banking attempts, while fathers’ self-reported perceived benefits (r_pb=.43, p=.03), self-reported barriers (r_pb=.49, p=.01), and proxy reports of adolescent perceived threat (r_pb=.38, p=.04) and benefits (r_pb=.59, p=.02) were associated with banking attempts.

Conclusion

Adolescent sperm banking attempt rates significantly increased after implementation of a family-centered FP values clarification tool prior to cancer treatment. Findings underscore the importance of targeting both adolescents and their parents, particularly fathers, in FP efforts.

     

Developing Strategies for Reducing Cancer Disparities via Cross-Institutional Collaboration: Outreach Efforts for the Partnership Between the Ponce School of Medicine and the Moffitt Cancer Center

The disproportionate burden of cancer among U.S. Hispanics is well documented. Historically, epidemiologic data on U.S. Hispanics and cancer have aggregated all Hispanics as one homogeneous group without appreciating the diversity of this population with regard to nativity (nationality/geographic origin). The authors report on the initial efforts of a collaborative academic institutional partnership between a minority-serving institution and a National Cancer Institute-designated cancer center to address cancer health disparities in two Hispanic communities in Puerto Rico and Florida. This article outlines the joint Outreach Program's initial collaborative strategies and activities in community outreach, cancer education, and research that mutually benefit both the Ponce (Puerto Rico) and Tampa (Florida) Hispanic communities. This partnership program used innovative multipronged community-engagement strategies in the two communities to reduce cancer health disparities. Specific projects and lessons learned from three outreach/cancer education projects and two pilot research projects are discussed. The challenges of balancing service and research agendas in communities with disparate levels of resources and infrastructure are summarized to inform future initiatives in this partnership, as well as serve as an example for similar minority-serving institution/cancer center partnerships to reduce cancer health disparities.     

Psychometric evaluation of a patient-reported outcome measure in pancreatic exocrine insufficiency (PEI)

Background/objectives

Pancreatic exocrine insufficiency (PEI) is commonly caused by chronic pancreatitis (CP) or cystic fibrosis (CF). There are no PEI-specific patient-reported assessments of symptoms and impacts. The PEI Questionnaire (PEI-Q) was developed through qualitative research with PEI patients and expert clinical input. This study evaluated the psychometric properties of the PEI-Q.

Hybrid melody pulmonary valve replacement in an adult with severe pulmonary hypertension and pulmonary artery aneurysm

A 48‐year‐old female with D‐TGA, ventricular septal defect (VSD), pulmonary stenosis, pulmonary hypertension (PAH), and total anomalous pulmonary venous connection underwent hybrid intervention for a pulmonary artery (PA) aneurysm and replacement of a dysfunctional pulmonary valve (PV). She underwent a hemi‐Mustard procedure at 9 years of age but remained cyanotic. She developed atrial fibrillation, heart failure, and functional decline at 43 years of age. A chest CT demonstrated a 6 cm PA aneurysm that upon re‐imaging at 48 years had increased to 11 cm. A catheterization procedure revealed severe PS, PR, residual VSD, severe PAH with a pulmonary vascular resistance of 30 Wood units. She was evaluated and turned down for heart‐lung transplantation at another institution. She was subsequently referred to our institution for heart‐lung transplantation but was felt to be at unacceptably high risk given the complexity of her anatomy, imaging suggesting liver cirrhosis and liver biopsy with extensive fibrosis. After extensive discussion of risk and benefits, the patient agreed to proceed with a hybrid intervention, consisting of surgical aneurysm resection/PA repair, tricuspid valve repair; PV replacement with a Melody valve, and VSD closure. There were no complications and she was discharged home within 2 weeks. Six months post procedure, she is not on oxygen, her resting room air saturation is 94%, and echocardiography shows stable Melody valve function. This case highlights the utility of a hybrid approach in the treatment of an adult with complex congenital heart disease, heart failure and severe PAH, considered at the highest risk for adverse surgical outcomes. The short‐term efficacy of the Melody valve in severe PAH is reassuring. © 2013 Wiley Periodicals, Inc.     

Peroneal nerve repetitive nerve stimulation test: Its value in diagnosis of myasthenia gravis and Lambert–Eaton myasthenic syndrome

We have developed a repetitive nerve stimulation (RNS) technique for the peroneal nerve. Normal limits for the decremental responses for the anterior tibialis and extensor digitorum brevis muscles are 6–21% at the low rate of stimulation and 44–70% at the high rate of stimulation. These values exceed the normal limits for other commonly tested muscles. This may be due to the lower safety factor for neuromuscular transmission for the anterior tibialis and extensor digitorum brevis muscles. We present 4 cases in which the peroneal nerve RNS test was crucial for the diagnosis of the limb-girdle form of MG or LEMS. Thus, we conclude that, in a small number of patients with neuromuscular transmission disorders, the peroneal nerve RNS test is needed for confirmation of disease. © 1995 John Wiley & Sons, Inc.